Scandinavian Journal of Occupational Therapy. 2014; 21: 24–30
ORIGINAL RESEARCH
The meaning of activity and participation in everyday life when living with hand osteoarthritis
ELISE BROMANN BUKHAVE1,2, KAREN la COUR1 & LOTTE HUNICHE1 1
University of Southern Denmark, Faculty of Health Sciences, Institute of Public Health, Research Unit of Man, Health & Society, Odense, Denmark, and 2University College Zealand, Occupational Therapy Programme, Naestved, Denmark
Abstract Objective: The aim of this paper is, first, to advance the understanding of participation and its relationship to activity; second, to add to discussions or understandings of the ICF by contributing an empirically derived understanding of participation and its relationship to activity connected to the conduct of everyday life in people with hand osteoarthritis (hand OA). Methods: Semistructured interviews were carried out with 31 men and women living with hand OA because existing research on this group and the challenges they encounter in their everyday life is sparse. The analytical process was inspired by Interpretive Phenomenological Analysis and informed by critical psychology and social practice theory as interpretive frameworks. Results: Our empirical findings indicate that persons with hand OA experience participation restrictions in their everyday lives and activity limitations as aspects of participation. This indicates that activity and participation are experienced as interrelated across social contexts. Conclusions: Participation in everyday life seems complex: what to participate in, how to participate and with whom seem of importance for subjective meaning-making. Implications are discussed in relation to methodology, the empirical findings, and clinical practice.
Key words: social practice, qualitative study, daily living, critical psychology
Introduction Since the publication of the International Classification of Functioning, Disability and Health (ICF) the concept of participation has received increasing attention (1–3). In this framework for describing and measuring health and disability, participation, together with activity, is understood as a component of functioning. In the ICF framework functioning is conceptualized as the result of the interaction between a health condition and contextual factors (personal and environmental) (4). Participation is defined as: “Involvement in a life situation”, while participation restrictions are defined as “problems an individual may experience in involvement in life situations” (1). Activity is defined as the: “Execution of a task or action by an individual” (1). The classification is theoretically derived and has provided standard
concepts and terminology for use in different fields of application, including clinical practice, research, education, public health, and health policy and has gained predominance in health discourses (2,5,6). The structure of the ICF is hierarchical and based on component and factor thinking, making it applicable for a variety of settings and purposes (4). Critiques of the ICF definition of participation focus on difficulties in distinguishing between activity and participation, inadequate recognition of subjective experience, and being largely quantifiable as performance [e.g. (2,6–10)]. Law states that “the central concept in participation is involvement or sharing, particularly in an activity”, and that both qualitative and quantitative elements are important [ (11), p. 641]. There seems to be consensus concerning the importance of participation as an outcome yet there seem to be some difficulties in establishing consensus on what
Correspondence: Elise Bomann Bukhave, PhD student, MEd, BA, OTR, University of Southern Denmark, JB Winsloewsvej 9B, 5000 Odense C, Denmark. E-mail: [email protected] (Received 27 November 2012; accepted 16 October 2013) ISSN 1103-8128 print/ISSN 1651-2014 online Ó 2014 Informa Healthcare DOI: 10.3109/11038128.2013.857428
The meaning of activity and participation participation is about (3,6,11,12). Literature searches were conducted in preparation for this study in databases used in clinical and health science research such as PubMed, Cinahl, and Web of Science and by reference searches. Only a limited number of empirical studies were identified concerning participation as it unfolds and takes place in practice. The starting point of this study was therefore an empirical exploration of participation and its relation to activity and to identify theoretical perspectives that can contribute to the understanding of participation in everyday life. The ICF is a widely used and important framework in occupational therapy. The aim of this paper is therefore to add to discussions and understandings of the ICF by contributing an empirically derived understanding of participation and its relationship to activity. The purpose of this qualitative study is to explore activity and participation as experienced by a Danish sample of persons with hand osteoarthritis (hand OA). Experiences of everyday life with hand OA were analysed within the theoretical framework of critical psychology and social practice theory leading to an elaboration of the concept of participation for clinical and rehabilitation purposes. We propose that by drawing on empirical findings and an analytical stance informed by theory the understanding of participation can be advanced. Material and methods Study population and recruitment The study population comprised 31 participants – 26 women and five men – aged between 38 and 89 years. Participants were purposefully selected based on a diagnosis of hand OA and with regard to a maximum variation, i.e. range of symptoms, functional difficulties, engaged in different kinds of daily activities, and demographic characteristics (13). Inclusion was based on the following criteria: males or females, disease duration 2+ years, different educational backgrounds, different employment status, single or living with partner, age above 35 years, and the ability to speak and understand Danish. The inclusion criteria were chosen on the assumption that participants will have experienced different kinds of challenges in managing their conduct of everyday life. Six participants were recruited through doctors (a GP and two rheumatologists) and these participants were mainly newly diagnosed by the recruiting doctor but had lived with hand OA symptoms for a long time. As recruitment via doctors progressed very slowly an additional recruitment strategy was developed. Participants were invited through an article about the study published in a member magazine of the Danish Rheumatism Association. Shortly after the
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publication of the article more than 100 people with hand OA volunteered their participation. According to inclusion criteria and in order to address the aim of this study the first author selected 25 participants from this group in addition to the initial six by phone call. Participants recruited through the magazine reported that they had been diagnosed with hand OA by a GP or rheumatologist: some reported that this diagnosis was based on clinical symptoms and radiographs, and some on clinical symptoms alone. Data production The study comprised interviews and participantgenerated photographs (13–15). Initially, one semistructured interview was carried out with each participant. Interviews lasted 11/2–2 hours and were guided by a semi-structured interview-guide (13), which covered three main fields of interest: patient perspectives on activity limitations; participation restrictions; and environmental support of importance for the conduct of everyday life. The interview-guide was based on two pilot interviews and existing research literature relevant to the topic; it also drew on the theoretical frameworks of critical psychology and social practice theory. Interview questions addressed: how participants experience everyday life with hand OA; how the disease affected their life; what kinds of support they found important for managing daily challenges; and the meaning ascribed to their experiences. Twenty-six of the 31 semi-structured interviews were conducted in the participants’ homes. Five interviews were conducted in an office at their work (two) or a university office (three). The venue for the interviews was decided by the participants. Eleven of the 31 participants were recruited to take part in an additional interview based on participantgenerated photographs (14,15). Participant-generated photographs have the potential to contribute possibly overlooked, not verbalized, or ignored subjective experiences of everyday living with hand OA which can then be explored in subsequent interviews as previous use in health research has shown [e.g. (15,16)]. Participants were encouraged to take photographs of activities and events in their everyday lives, over a period of two–four weeks, which could illustrate what it is like to live with hand OA. Participants were given a digital camera, though some preferred to use their own. Upon returning the photographs the participants were interviewed about the content of their photographs – using them as a probe and guide for dialogue. A total of 43 interviews were conducted including photo-interviews by the first author. All interviews (initial as well as photo-interviews) were digitally recorded and transcribed verbatim and no
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distinction was made between the different interviews during analysis. Data analysis Data analysis was based on the theoretical framework of critical psychology. This framework does not provide a specific “model” for analysis and the method of Interpretive Phenomenological Analysis (17–19) served as supplementary procedural tool. Each transcript was read a number of times in its entirety to gain a sense of the participants’ experience as a whole and in order to become familiar with the participant’s narrative and central points of the interview. Life conditions of importance to the participants’ conduct of everyday life, their meaning and the reasons for acting in specific ways guided the analysis (20,21). Significant passages were highlighted and annotations were made in the margins relating to participants’ experiences of activity and participation, environmental support of importance for managing the conduct of everyday life. The process of annotating, paraphrasing, or summarizing the participant’s words was applied to each transcript in its entirety. After having identified and coded themes in each interview these were compared and cross-referenced across interviews, leading to the development of overall empirical themes (18). Photo-interviews were analysed in the same way, providing additional detail and nuance to the initial interview. Initial reading of transcripts and analysis was conducted by the first author. Parts of transcripts and analysis were then discussed with the co-authors, both senior researchers. Theoretical framework Participation is a central concept within both critical psychology and social practice theory, and rooted in an understanding of a dialectical relation between human beings and their social contexts (20–26). Subject is the term for human being or person within the critical psychological tradition (20,25,26). Subjects are characterized by living as participants in societal structures with conditions that pose possibilities and limitations on unfolding their lives (20,21). People participate in and contribute to these structures of social practice as members of specific contexts of action in which they involve themselves (20–22). This means that participation cannot be fully understood if isolated from the contexts in which it takes place or from the participatory endeavours expressed in any activity. Participation is both personal and related to the participation of other people. The meaning of what we do is always social (20). Participation reaches beyond the context in which action takes place; it creates connections and obtains
importance also through participation in and across contexts the subject enters into. Personal abilities are the personal preconditions that enable a person to participate in a social practice (22,25). Ethical considerations The study was approved by the Danish Data Protection Agency (J.nr. 2010-41-5423) and complies with the Helsinki Declaration. Informed oral and written consent was obtained from all participants. To uphold confidentiality all names are pseudonyms. For photointerviews specific actions were taken to ensure confidentiality and anonymity of participants and other photographed individuals. A specific informed consent was obtained. Attention was given to thorough information about ethics concerning photography in the private sphere. Photos included in the study were selected after careful reflection and with permission of the participant. Findings The meaning of participation Findings relating to the concept of participation will be presented in the next sections, followed by a discussion of how empirical findings and the theoretical framework can contribute to the understanding of participation. To bring forth the contextual nature of participation, three participants were selected and are presented as case descriptions. The three cases are not significantly different from the rest and were selected because they display some particularities yet also share general issues identified across the whole data set. The cases shed light on aspects of participation that relate to meaning, the importance of social contexts, and to being active. In so doing, the three cases demonstrate the interplay between activity and participation in the contexts of everyday life. Elaborating on three cases allow for more extensive in-depth analysis of how they actively participate in various contexts, how they struggle to uphold preferred activities, and how they display different strategies for managing difficulties. The cases presented are: Olina (72 years old), Christian (52 years old), and Emma (71 years old). Two cases are based on one interview whereas one case (Olina) is based on both interview and photo-interview, the former being deepened by the latter. Olina – Struggling for participation Olina lives with her husband and is retired. Olina said that she celebrated Christmas Eve at her son’s house with the family: she was responsible for roasting and
The meaning of activity and participation preparing two ducks and bringing them to the party. Jointing the ducks has now become very difficult for her because of stiffness and deformity of finger joints, reduced grip strength, and pain. Her son has told her that she would be welcome to join the Christmas party without ducks, which Olina refused rather firmly. She feels this would be a limitation of her active participation on Christmas Eve and she wants to keep doing this as long as possible. Inspired by a TV-show with Jamie Oliver she bought a special kitchen device (called “helping hand”) with which she managed to “joint” one duck last Christmas. The jointing was not as neat as in the past but acceptable to her. Reflecting on giving up her part of the Christmas dinner, she said: “No! I wanted to try this, and it worked fine. It is a smart thing, and maybe I can use it for other things too?” Olina struggled to participate and considered other ways of performing her usual activity. In the above example she gives a glimpse into an important aspect of the subjective meaning of participation. It would not satisfy her to give up on her active participation i.e. preparing and bringing ducks for dinner. Being able to participate by using the helping hand she has “bought” herself some extra time before she has to change the activity again or give it up for good in response to conditions like her worsening hand function. By using the kitchen device she has actively expanded her personal abilities in the interplay between context, person, and social practice. By testing the device for other purposes Olina demonstrates expanding personal ability in her struggle for participation. Christian – Standing on the sidelines Christian is living with his wife and children. He is on medical leave from work because of hand OA. Besides being a skilled craftsman Christian was a very competent golf player and playing golf was central to his family’s time together. The social practices around golf carried a lot of meaning to Christian. He was the master player and he taught his children golf. The family has a summer residence near a golf course and playing golf was the family’s primary leisure activity. Christian used to meet with male friends and his brothers to play golf twice a month, either at the golf course near his summer residence or at other golf courses around the country. Sometimes Christian and his friends also went abroad on holiday to play golf and also to engage in other sports such as skiing, which Christian also used to enjoy a lot. Because of reduced grip strength, sensory problems, and pain Christian had to give up playing golf two years ago and subsequently also gave up skiing:
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“Suddenly you are together in another way – only for a beer or whatever – because you no longer walk around [on the course] enjoying yourselves and having a laugh. Now it is just talking a little – I liked the other way better. We were a group of six men who often went skiing together. By the way I can’t do that any more either. Skiing is another leisure activity that has gone. . .. I haven’t replaced it [skiing and golf] with anything. Except that I stand on the sidelines to watch my youngest daughter playing soccer. . .. But that is not something you [I] get exercise from.” Christian expressed missing being part of the male community of practice. He missed the action and having the fun of the activities. The frequency of being with friends and brothers has decreased as a consequence of Christian not being able to participate actively in these activities any longer. His participation in one context interrelates with activities in and across other contexts. Christian now sees himself merely as a spectator to his life, as expressed by the double– meaning metaphor “standing on the sidelines”. Christian exemplifies how activity limitations are situated yet cross contexts and may become a barrier to participation in other social practices like family life in the summer residence.
Emma – Can you stand to quit? Emma lives with her husband who suffers from memory impairments. She retired when she was 65 and then took up fishing. She holds membership of a local fishing club for women. The members meet weekly and jointly go fishing in lakes or streams. They stand by themselves and intensely enjoy the fishing, the nature, and the quiet. After fishing they gather to inspect each other’s catch. Central to the activity is the competition of getting a catch, preferably the biggest one. On these occasions the women also chat and have coffee together. The fishing club members also go on fishing trips to Sweden, for example, once or twice yearly where they organize fishing competitions. Emma has increasing problems with maintaining the activity due to her worsening hand function and pain. It has become difficult for her for instance to hold the fishing rod in a firm grip for a long time (hours) in often cold and damp weather conditions or to tie knots in the thin fishing line. She uses painkillers for these occasions so she can actively take part in the women’s fishing community. Because she does not want to give up fishing she has searched in shops around town for different helping aids (e.g. elastic wrist bands, easy-to-carry bags with suitable handles) that might support her in maintaining the activity. Confronted with a fishing friend’s concerns about pain and thinking about quitting fishing Emma
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expressed that quitting fishing was not an option for her: “We have someone in the club – she is one year older than I am – and she says: “Oh, it’s so painful! I don’t want to go on [fishing] any more – I can’t stand it in my fingers! Then I say: “But can you quit?” right? So as I say: “Can you stand to quit?” She felt she had more problems doing it [fishing] than the opposite.” Emma preferred to make changes to the needed activities (change of fishing line, knot tying techniques) in order to be able to continue fishing. Her friends are helpful and inclusive: “If there is something that takes a lot of strength to do, one of them always says: “Don’t do it, we’ll do it for you”. They do. . .. Sometimes I go to the inlet myself to fish for a couple of hours, right? But mostly I do it with others. Well, I do. I do.” Her participation connects her to the fishing community, which is as important to her as fishing itself. Emma sees the women only for fishing and related activities. Discussion Empirical findings indicate that persons with hand OA experience activity limitations as part of their participation in the conduct of everyday life. Participation is about actively taking part in significant and meaningful social practices whereas activity limitations are about technical and physiological problems; they are task specific and related to performance, which supports the ICF conceptualization of activity limitations (1,4). Activity and participation are different but interrelated dimensions and hard to distinguish from one another in everyday life. These are important considerations for clinical practice in order to identify the scope of a client’s activity limitations at any stage of rehabilitation. The participants’ participation in structures of social practice constitutes “membership” of specific contexts of action that they involve themselves in. The case of Christian illustrated how he did not consider socializing with friends over a glass of beer as being as satisfying as playing golf with them: “I liked the other way better”. This suggests that the structure of social practice is of significance for subjective meaningmaking, as also stated by critical psychology (20,21). According to critical psychology life conditions may be changed through participation, whereby activity dynamically links the subject and the social world in practice (20). By using the “helping hand” for dinner preparation, Olina demonstrated an expansion of her personal abilities (20), which enabled her to uphold preferred activities and maintain participation. Emma employed similar strategies, such as using elastic wristbands and help from peers in order to maintain participation in her community of fisher women. By
employing self-invented strategies and using environmental support Olina and Emma changed some of their life conditions and as a result improved their possibilities for participation – thus indicating that much is at stake when participating. Their activities – dinner preparation and fishing respectively – connected them with their social world through participation (20). Jointing of the duck held personal as well as social meaning for Olina and the structures of social practice connected her with her family. These cases illustrate how participation is a way of communicating with the social world (20,21,23). Christian handled the difficulties he faced in playing golf differently from Olina and Emma. Christian’s experienced activity limitations and dissatisfying performance led to negative experiences of participation and finally to withdrawal. This affected activities in other social contexts of his life negatively and weakened his social relationships. Being in the summer residence reminded him of his lost abilities and happy family gettogethers and he missed being actively involved in the social practices surrounding family life. Activity limitations related to playing golf impacted on Christian’s participation in different social contexts, including outside the immediate context. Contexts are not only part of structures of social practice but also part of the participants’ lives (20). Christian had reduced his participation in a variety of life contexts in recent years, thus restricting his possibilities for upholding preferred ways of conducting his life. These findings support findings from other studies that found subjective dimensions of participation important (2,7). Like other studies the present study also indicates a need for further exploration of matters of subjective experiences (2,7). The purpose of this paper is to contribute to a wider and more differentiated understanding of the concept of participation rather than to delineate a singular “truth” of what participation comprises. The contribution of critical psychology is that the dialectical concept of participation emphasizes interactional aspects of personal lives. Participation implies some kind of action and interaction with others in and across social contexts. It also foregrounds the subject’s active process (20,26). The ICF framework acknowledges activity and participation as components of functioning in relation to disability. From a critical psychological perspective a critique may be directed at the separation of functional aspects into aspects understood as co-working causes. Rather, there is an emphasis on the subject’s production and re-production of possibilities for participating in and across contexts in active pursuit of a meaningful life (20). The empirical findings from the study presented indicate that what to participate in, how to participate, and with whom is of importance for the subjective meaning-making.
The meaning of activity and participation Critical psychology and social practice theory point to an overall understanding of subjects as participants in social practices embedded in contexts of everyday life, reasoning their acting in response to life conditions and subjective meaning. Both activity and participation are integral parts of social practices. Apart from the paradigmatic differences between the ICF framework and critical psychology there are also fundamental differences between the features and purposes of a classification on disability and health and a generic theory on social practice. Participation may be a concept in the borderlands between humanistic and bio-medical paradigms and be too complex to be understood within either paradigm alone. Based on the theoretical frameworks of critical psychology and social practice theory this study adds to discussions or understandings of the ICF classification, and highlights the complexity of the conduct of everyday life. In so doing, this study furthers possibilities of understanding this complexity. Methodological considerations Recruitment to the study was difficult as the study population is neither hospitalized nor regularly seen by GPs, specialists, or at rehabilitation centres. Apart from six of 31, participants were self-selected through a call in a member magazine and the study population can therefore be considered to be biased towards participants with specific interests or problems/needs. Participants recruited through doctors were not actively engaged in a patient organization but otherwise did not differ significantly in how they lead their lives from those who were – i.e. they did not differ in terms of their personal, demographic, and disease characteristics. As the main focus of the study was to explore subjective experience and meaning-making related to activity and participation in everyday life the study population engendered insights into active strategies and ways of managing difficulties. These insights point to various difficulties this patient group faces and the need to develop treatment and support to counteract such difficulties. A potential limitation to the study was that hand OA was self-reported for participants recruited through the magazine, since we were not able to attain documentation for their diagnosis. On inclusion they were all asked specifically about being diagnosed by a doctor and how. Only those who stated they had been given a diagnosis were included. Presenting the findings through three cases has the potential disadvantage of suppressing other important voices from the data set. The cases were selected according to their ability to display some general issues throughout the empirical material thus counteracting this potential disadvantage. The approach
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proved to be beneficial for providing comprehensive contextual information for such a complex concept as participation. Generating information about social practice to inform the concept of participation is a methodological challenge. To produce information on participation research, questions about participation had to be phrased in ways relevant to the social practices of the participants. The choice of an open-ended method for generating data provided flexibility and proved to be well suited to explore experiences of participation in multiple social contexts. Conducting photointerviews proved to be beneficial for exploring issues of relevance to managing everyday living. The approach reduced the authority of the researcher and helped to raise the participants’ voices.
Conclusion Empirical findings indicate that persons with hand OA experience participation restrictions in the conduct of everyday life. Self-invented strategies and environmental support are amongst the main features of how participants manage difficulties and challenges. The study participants experienced activity and participation as interrelated across social contexts. Participation is about actively taking part in social practices in situations of significance and meaningfulness, whereas activity limitations focus on technical and physiological problems that are task-specific and related to performance. These insights are important for considering the development of clinical practice in order to identify the scope of clients’ activity limitations at any stage of rehabilitation. Acknowledgements: The authors are grateful to all who participated in this study. The study was financially supported by grants from the University of Southern Denmark, the University College Zealand, the Research Foundation of the Danish Association of Occupational Therapists, the Research Initiative for Activity Studies, and The Danish Rheumatism Association. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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3. Cardol M, de Jong B, Ward CD. On autonomy and participation. Disabil Rehabil 2002;24:970–4. 4. Bickenbach J, Cieza A, Rauch A, Stucki G. ICF core sets. Göttingen: Hogrefe Publishing; 2012. 5. Geyh S, Peter C, Müller R, Bickenbach JE, Kostanjsek N, Üstün BT, et al. The personal factors of the International Classification of Functioning, Disability and Health in the literature: a systematic review and content analysis. Disabil Rehabil 2011;33:1089–102. 6. Dijkers M. Issues in the conceptualization and measurement of participation: an overview. Arch Phys Med Rehabil 2010; 91:5–16. 7. Borell L, Asaba E, Rosenberg L, Schult M-L, Townsend E. Exploring experiences of “participation” among individuals living with chronic pain. Scand J Occup Ther 2006;13:76–85. 8. Ueda S, Okawa Y. The subjective dimension of functioning and disability: what it is and what it is for? Disabil Rehabil 2003;25:596–601. 9. Alan JM, Haley SM, Kooyoomjian JT. Are the ICF activity and participationdimensionsdistinct?JRehabilMed2003;35:145–9. 10. Alan JM, Tao W, Haley SM. Blending activity and participation sub-domains of the ICF. Disabil Rehabil 2007;29:1742–50. 11. Law M. Participation in the occupations of everyday life. Am J Occup Ther 2002;56:640–9. 12. Heinemann AW. Measurement of participation in rehabilitation research. Arch Phys Med Rehabil 2010;91:1–4. 13. Kvale S, Brinkmann S. Interview. 2. Udgave. København: Hans Reitzels Forlag; 2009. 14. Packard J. I’m gonna show you what it’s really like out there: the power and limitations of participatory visual methods. Vis Stud 2008;23:63–77. 15. Drew SE, Duncan RE, Sawyer SM. Visual storytelling: A beneficial but challenging method for health research with young people. Qual Health Res 2010;20:1677–88.
16. Baker TA, Wang CC. Photovoice: Use of a participatory research method to explore the chronic pain experience in older adults. Qual Health Res 2006;16:1405–13. 17. Smith JA. Reflecting on the development of interpretive phenomenological analysis and its contribution to qualitative research in psychology. Qual Res Psych 2004;1: 39–54. 18. Smith JA, Osborn M. Interpretive phenomenological analysis. In Smith JA, editor. Qualitative psychology: a practical guide to research methods. London: Sage; 2008. pp 51–80. 19. Brocki JM, Wearden AJ. A critical evaluation of the use of interpretive phenomenological analysis (IPA) in health psychology. Psycholo & Health 2006;21:87–108. 20. Dreier O. Psychotherapy in everyday life. New York: Cambridge University Press; 2008. 21. Højholt C. Participation in communities: Living and learning across different contexts. J Aust Res Early Childhood Educ 2008;15:1–12. 22. Højholt C. Cooperation between professionals in educational psychology: children’s specific problems are connected to general dilemmas in relation to taking part. In Daniels H, Hedegaard M, editors. Vygotsky and special needs education: rethinking support for children and scools. London: Continuum Press; 2011. 23. Lave J. Apprenticeship in critical ethnographic practice. Chicago: University of Chicago Press; 2011. 24. Lave J, Wenger E. Situated learning. Legitimate peripheral participation. Cambridge: Cambridge University Press; 1991. 25. Mørck LL, Huniche L. Critical psychology in a Danish context. Ann Rev Crit Psychology. 2006. 5 http://www.discourseunit.com/arcp/5. 26. Holzkamp K. On doing psychology critically. Theor Psycholo 1992;2:193–204.
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ORIGINAL RESEARCH
The meaning of activity and participation in everyday life when living with hand osteoarthritis
ELISE BROMANN BUKHAVE1,2, KAREN la COUR1 & LOTTE HUNICHE1 1
University of Southern Denmark, Faculty of Health Sciences, Institute of Public Health, Research Unit of Man, Health & Society, Odense, Denmark, and 2University College Zealand, Occupational Therapy Programme, Naestved, Denmark
Abstract Objective: The aim of this paper is, first, to advance the understanding of participation and its relationship to activity; second, to add to discussions or understandings of the ICF by contributing an empirically derived understanding of participation and its relationship to activity connected to the conduct of everyday life in people with hand osteoarthritis (hand OA). Methods: Semistructured interviews were carried out with 31 men and women living with hand OA because existing research on this group and the challenges they encounter in their everyday life is sparse. The analytical process was inspired by Interpretive Phenomenological Analysis and informed by critical psychology and social practice theory as interpretive frameworks. Results: Our empirical findings indicate that persons with hand OA experience participation restrictions in their everyday lives and activity limitations as aspects of participation. This indicates that activity and participation are experienced as interrelated across social contexts. Conclusions: Participation in everyday life seems complex: what to participate in, how to participate and with whom seem of importance for subjective meaning-making. Implications are discussed in relation to methodology, the empirical findings, and clinical practice.
Key words: social practice, qualitative study, daily living, critical psychology
Introduction Since the publication of the International Classification of Functioning, Disability and Health (ICF) the concept of participation has received increasing attention (1–3). In this framework for describing and measuring health and disability, participation, together with activity, is understood as a component of functioning. In the ICF framework functioning is conceptualized as the result of the interaction between a health condition and contextual factors (personal and environmental) (4). Participation is defined as: “Involvement in a life situation”, while participation restrictions are defined as “problems an individual may experience in involvement in life situations” (1). Activity is defined as the: “Execution of a task or action by an individual” (1). The classification is theoretically derived and has provided standard
concepts and terminology for use in different fields of application, including clinical practice, research, education, public health, and health policy and has gained predominance in health discourses (2,5,6). The structure of the ICF is hierarchical and based on component and factor thinking, making it applicable for a variety of settings and purposes (4). Critiques of the ICF definition of participation focus on difficulties in distinguishing between activity and participation, inadequate recognition of subjective experience, and being largely quantifiable as performance [e.g. (2,6–10)]. Law states that “the central concept in participation is involvement or sharing, particularly in an activity”, and that both qualitative and quantitative elements are important [ (11), p. 641]. There seems to be consensus concerning the importance of participation as an outcome yet there seem to be some difficulties in establishing consensus on what
Correspondence: Elise Bomann Bukhave, PhD student, MEd, BA, OTR, University of Southern Denmark, JB Winsloewsvej 9B, 5000 Odense C, Denmark. E-mail: [email protected] (Received 27 November 2012; accepted 16 October 2013) ISSN 1103-8128 print/ISSN 1651-2014 online Ó 2014 Informa Healthcare DOI: 10.3109/11038128.2013.857428
The meaning of activity and participation participation is about (3,6,11,12). Literature searches were conducted in preparation for this study in databases used in clinical and health science research such as PubMed, Cinahl, and Web of Science and by reference searches. Only a limited number of empirical studies were identified concerning participation as it unfolds and takes place in practice. The starting point of this study was therefore an empirical exploration of participation and its relation to activity and to identify theoretical perspectives that can contribute to the understanding of participation in everyday life. The ICF is a widely used and important framework in occupational therapy. The aim of this paper is therefore to add to discussions and understandings of the ICF by contributing an empirically derived understanding of participation and its relationship to activity. The purpose of this qualitative study is to explore activity and participation as experienced by a Danish sample of persons with hand osteoarthritis (hand OA). Experiences of everyday life with hand OA were analysed within the theoretical framework of critical psychology and social practice theory leading to an elaboration of the concept of participation for clinical and rehabilitation purposes. We propose that by drawing on empirical findings and an analytical stance informed by theory the understanding of participation can be advanced. Material and methods Study population and recruitment The study population comprised 31 participants – 26 women and five men – aged between 38 and 89 years. Participants were purposefully selected based on a diagnosis of hand OA and with regard to a maximum variation, i.e. range of symptoms, functional difficulties, engaged in different kinds of daily activities, and demographic characteristics (13). Inclusion was based on the following criteria: males or females, disease duration 2+ years, different educational backgrounds, different employment status, single or living with partner, age above 35 years, and the ability to speak and understand Danish. The inclusion criteria were chosen on the assumption that participants will have experienced different kinds of challenges in managing their conduct of everyday life. Six participants were recruited through doctors (a GP and two rheumatologists) and these participants were mainly newly diagnosed by the recruiting doctor but had lived with hand OA symptoms for a long time. As recruitment via doctors progressed very slowly an additional recruitment strategy was developed. Participants were invited through an article about the study published in a member magazine of the Danish Rheumatism Association. Shortly after the
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publication of the article more than 100 people with hand OA volunteered their participation. According to inclusion criteria and in order to address the aim of this study the first author selected 25 participants from this group in addition to the initial six by phone call. Participants recruited through the magazine reported that they had been diagnosed with hand OA by a GP or rheumatologist: some reported that this diagnosis was based on clinical symptoms and radiographs, and some on clinical symptoms alone. Data production The study comprised interviews and participantgenerated photographs (13–15). Initially, one semistructured interview was carried out with each participant. Interviews lasted 11/2–2 hours and were guided by a semi-structured interview-guide (13), which covered three main fields of interest: patient perspectives on activity limitations; participation restrictions; and environmental support of importance for the conduct of everyday life. The interview-guide was based on two pilot interviews and existing research literature relevant to the topic; it also drew on the theoretical frameworks of critical psychology and social practice theory. Interview questions addressed: how participants experience everyday life with hand OA; how the disease affected their life; what kinds of support they found important for managing daily challenges; and the meaning ascribed to their experiences. Twenty-six of the 31 semi-structured interviews were conducted in the participants’ homes. Five interviews were conducted in an office at their work (two) or a university office (three). The venue for the interviews was decided by the participants. Eleven of the 31 participants were recruited to take part in an additional interview based on participantgenerated photographs (14,15). Participant-generated photographs have the potential to contribute possibly overlooked, not verbalized, or ignored subjective experiences of everyday living with hand OA which can then be explored in subsequent interviews as previous use in health research has shown [e.g. (15,16)]. Participants were encouraged to take photographs of activities and events in their everyday lives, over a period of two–four weeks, which could illustrate what it is like to live with hand OA. Participants were given a digital camera, though some preferred to use their own. Upon returning the photographs the participants were interviewed about the content of their photographs – using them as a probe and guide for dialogue. A total of 43 interviews were conducted including photo-interviews by the first author. All interviews (initial as well as photo-interviews) were digitally recorded and transcribed verbatim and no
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distinction was made between the different interviews during analysis. Data analysis Data analysis was based on the theoretical framework of critical psychology. This framework does not provide a specific “model” for analysis and the method of Interpretive Phenomenological Analysis (17–19) served as supplementary procedural tool. Each transcript was read a number of times in its entirety to gain a sense of the participants’ experience as a whole and in order to become familiar with the participant’s narrative and central points of the interview. Life conditions of importance to the participants’ conduct of everyday life, their meaning and the reasons for acting in specific ways guided the analysis (20,21). Significant passages were highlighted and annotations were made in the margins relating to participants’ experiences of activity and participation, environmental support of importance for managing the conduct of everyday life. The process of annotating, paraphrasing, or summarizing the participant’s words was applied to each transcript in its entirety. After having identified and coded themes in each interview these were compared and cross-referenced across interviews, leading to the development of overall empirical themes (18). Photo-interviews were analysed in the same way, providing additional detail and nuance to the initial interview. Initial reading of transcripts and analysis was conducted by the first author. Parts of transcripts and analysis were then discussed with the co-authors, both senior researchers. Theoretical framework Participation is a central concept within both critical psychology and social practice theory, and rooted in an understanding of a dialectical relation between human beings and their social contexts (20–26). Subject is the term for human being or person within the critical psychological tradition (20,25,26). Subjects are characterized by living as participants in societal structures with conditions that pose possibilities and limitations on unfolding their lives (20,21). People participate in and contribute to these structures of social practice as members of specific contexts of action in which they involve themselves (20–22). This means that participation cannot be fully understood if isolated from the contexts in which it takes place or from the participatory endeavours expressed in any activity. Participation is both personal and related to the participation of other people. The meaning of what we do is always social (20). Participation reaches beyond the context in which action takes place; it creates connections and obtains
importance also through participation in and across contexts the subject enters into. Personal abilities are the personal preconditions that enable a person to participate in a social practice (22,25). Ethical considerations The study was approved by the Danish Data Protection Agency (J.nr. 2010-41-5423) and complies with the Helsinki Declaration. Informed oral and written consent was obtained from all participants. To uphold confidentiality all names are pseudonyms. For photointerviews specific actions were taken to ensure confidentiality and anonymity of participants and other photographed individuals. A specific informed consent was obtained. Attention was given to thorough information about ethics concerning photography in the private sphere. Photos included in the study were selected after careful reflection and with permission of the participant. Findings The meaning of participation Findings relating to the concept of participation will be presented in the next sections, followed by a discussion of how empirical findings and the theoretical framework can contribute to the understanding of participation. To bring forth the contextual nature of participation, three participants were selected and are presented as case descriptions. The three cases are not significantly different from the rest and were selected because they display some particularities yet also share general issues identified across the whole data set. The cases shed light on aspects of participation that relate to meaning, the importance of social contexts, and to being active. In so doing, the three cases demonstrate the interplay between activity and participation in the contexts of everyday life. Elaborating on three cases allow for more extensive in-depth analysis of how they actively participate in various contexts, how they struggle to uphold preferred activities, and how they display different strategies for managing difficulties. The cases presented are: Olina (72 years old), Christian (52 years old), and Emma (71 years old). Two cases are based on one interview whereas one case (Olina) is based on both interview and photo-interview, the former being deepened by the latter. Olina – Struggling for participation Olina lives with her husband and is retired. Olina said that she celebrated Christmas Eve at her son’s house with the family: she was responsible for roasting and
The meaning of activity and participation preparing two ducks and bringing them to the party. Jointing the ducks has now become very difficult for her because of stiffness and deformity of finger joints, reduced grip strength, and pain. Her son has told her that she would be welcome to join the Christmas party without ducks, which Olina refused rather firmly. She feels this would be a limitation of her active participation on Christmas Eve and she wants to keep doing this as long as possible. Inspired by a TV-show with Jamie Oliver she bought a special kitchen device (called “helping hand”) with which she managed to “joint” one duck last Christmas. The jointing was not as neat as in the past but acceptable to her. Reflecting on giving up her part of the Christmas dinner, she said: “No! I wanted to try this, and it worked fine. It is a smart thing, and maybe I can use it for other things too?” Olina struggled to participate and considered other ways of performing her usual activity. In the above example she gives a glimpse into an important aspect of the subjective meaning of participation. It would not satisfy her to give up on her active participation i.e. preparing and bringing ducks for dinner. Being able to participate by using the helping hand she has “bought” herself some extra time before she has to change the activity again or give it up for good in response to conditions like her worsening hand function. By using the kitchen device she has actively expanded her personal abilities in the interplay between context, person, and social practice. By testing the device for other purposes Olina demonstrates expanding personal ability in her struggle for participation. Christian – Standing on the sidelines Christian is living with his wife and children. He is on medical leave from work because of hand OA. Besides being a skilled craftsman Christian was a very competent golf player and playing golf was central to his family’s time together. The social practices around golf carried a lot of meaning to Christian. He was the master player and he taught his children golf. The family has a summer residence near a golf course and playing golf was the family’s primary leisure activity. Christian used to meet with male friends and his brothers to play golf twice a month, either at the golf course near his summer residence or at other golf courses around the country. Sometimes Christian and his friends also went abroad on holiday to play golf and also to engage in other sports such as skiing, which Christian also used to enjoy a lot. Because of reduced grip strength, sensory problems, and pain Christian had to give up playing golf two years ago and subsequently also gave up skiing:
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“Suddenly you are together in another way – only for a beer or whatever – because you no longer walk around [on the course] enjoying yourselves and having a laugh. Now it is just talking a little – I liked the other way better. We were a group of six men who often went skiing together. By the way I can’t do that any more either. Skiing is another leisure activity that has gone. . .. I haven’t replaced it [skiing and golf] with anything. Except that I stand on the sidelines to watch my youngest daughter playing soccer. . .. But that is not something you [I] get exercise from.” Christian expressed missing being part of the male community of practice. He missed the action and having the fun of the activities. The frequency of being with friends and brothers has decreased as a consequence of Christian not being able to participate actively in these activities any longer. His participation in one context interrelates with activities in and across other contexts. Christian now sees himself merely as a spectator to his life, as expressed by the double– meaning metaphor “standing on the sidelines”. Christian exemplifies how activity limitations are situated yet cross contexts and may become a barrier to participation in other social practices like family life in the summer residence.
Emma – Can you stand to quit? Emma lives with her husband who suffers from memory impairments. She retired when she was 65 and then took up fishing. She holds membership of a local fishing club for women. The members meet weekly and jointly go fishing in lakes or streams. They stand by themselves and intensely enjoy the fishing, the nature, and the quiet. After fishing they gather to inspect each other’s catch. Central to the activity is the competition of getting a catch, preferably the biggest one. On these occasions the women also chat and have coffee together. The fishing club members also go on fishing trips to Sweden, for example, once or twice yearly where they organize fishing competitions. Emma has increasing problems with maintaining the activity due to her worsening hand function and pain. It has become difficult for her for instance to hold the fishing rod in a firm grip for a long time (hours) in often cold and damp weather conditions or to tie knots in the thin fishing line. She uses painkillers for these occasions so she can actively take part in the women’s fishing community. Because she does not want to give up fishing she has searched in shops around town for different helping aids (e.g. elastic wrist bands, easy-to-carry bags with suitable handles) that might support her in maintaining the activity. Confronted with a fishing friend’s concerns about pain and thinking about quitting fishing Emma
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expressed that quitting fishing was not an option for her: “We have someone in the club – she is one year older than I am – and she says: “Oh, it’s so painful! I don’t want to go on [fishing] any more – I can’t stand it in my fingers! Then I say: “But can you quit?” right? So as I say: “Can you stand to quit?” She felt she had more problems doing it [fishing] than the opposite.” Emma preferred to make changes to the needed activities (change of fishing line, knot tying techniques) in order to be able to continue fishing. Her friends are helpful and inclusive: “If there is something that takes a lot of strength to do, one of them always says: “Don’t do it, we’ll do it for you”. They do. . .. Sometimes I go to the inlet myself to fish for a couple of hours, right? But mostly I do it with others. Well, I do. I do.” Her participation connects her to the fishing community, which is as important to her as fishing itself. Emma sees the women only for fishing and related activities. Discussion Empirical findings indicate that persons with hand OA experience activity limitations as part of their participation in the conduct of everyday life. Participation is about actively taking part in significant and meaningful social practices whereas activity limitations are about technical and physiological problems; they are task specific and related to performance, which supports the ICF conceptualization of activity limitations (1,4). Activity and participation are different but interrelated dimensions and hard to distinguish from one another in everyday life. These are important considerations for clinical practice in order to identify the scope of a client’s activity limitations at any stage of rehabilitation. The participants’ participation in structures of social practice constitutes “membership” of specific contexts of action that they involve themselves in. The case of Christian illustrated how he did not consider socializing with friends over a glass of beer as being as satisfying as playing golf with them: “I liked the other way better”. This suggests that the structure of social practice is of significance for subjective meaningmaking, as also stated by critical psychology (20,21). According to critical psychology life conditions may be changed through participation, whereby activity dynamically links the subject and the social world in practice (20). By using the “helping hand” for dinner preparation, Olina demonstrated an expansion of her personal abilities (20), which enabled her to uphold preferred activities and maintain participation. Emma employed similar strategies, such as using elastic wristbands and help from peers in order to maintain participation in her community of fisher women. By
employing self-invented strategies and using environmental support Olina and Emma changed some of their life conditions and as a result improved their possibilities for participation – thus indicating that much is at stake when participating. Their activities – dinner preparation and fishing respectively – connected them with their social world through participation (20). Jointing of the duck held personal as well as social meaning for Olina and the structures of social practice connected her with her family. These cases illustrate how participation is a way of communicating with the social world (20,21,23). Christian handled the difficulties he faced in playing golf differently from Olina and Emma. Christian’s experienced activity limitations and dissatisfying performance led to negative experiences of participation and finally to withdrawal. This affected activities in other social contexts of his life negatively and weakened his social relationships. Being in the summer residence reminded him of his lost abilities and happy family gettogethers and he missed being actively involved in the social practices surrounding family life. Activity limitations related to playing golf impacted on Christian’s participation in different social contexts, including outside the immediate context. Contexts are not only part of structures of social practice but also part of the participants’ lives (20). Christian had reduced his participation in a variety of life contexts in recent years, thus restricting his possibilities for upholding preferred ways of conducting his life. These findings support findings from other studies that found subjective dimensions of participation important (2,7). Like other studies the present study also indicates a need for further exploration of matters of subjective experiences (2,7). The purpose of this paper is to contribute to a wider and more differentiated understanding of the concept of participation rather than to delineate a singular “truth” of what participation comprises. The contribution of critical psychology is that the dialectical concept of participation emphasizes interactional aspects of personal lives. Participation implies some kind of action and interaction with others in and across social contexts. It also foregrounds the subject’s active process (20,26). The ICF framework acknowledges activity and participation as components of functioning in relation to disability. From a critical psychological perspective a critique may be directed at the separation of functional aspects into aspects understood as co-working causes. Rather, there is an emphasis on the subject’s production and re-production of possibilities for participating in and across contexts in active pursuit of a meaningful life (20). The empirical findings from the study presented indicate that what to participate in, how to participate, and with whom is of importance for the subjective meaning-making.
The meaning of activity and participation Critical psychology and social practice theory point to an overall understanding of subjects as participants in social practices embedded in contexts of everyday life, reasoning their acting in response to life conditions and subjective meaning. Both activity and participation are integral parts of social practices. Apart from the paradigmatic differences between the ICF framework and critical psychology there are also fundamental differences between the features and purposes of a classification on disability and health and a generic theory on social practice. Participation may be a concept in the borderlands between humanistic and bio-medical paradigms and be too complex to be understood within either paradigm alone. Based on the theoretical frameworks of critical psychology and social practice theory this study adds to discussions or understandings of the ICF classification, and highlights the complexity of the conduct of everyday life. In so doing, this study furthers possibilities of understanding this complexity. Methodological considerations Recruitment to the study was difficult as the study population is neither hospitalized nor regularly seen by GPs, specialists, or at rehabilitation centres. Apart from six of 31, participants were self-selected through a call in a member magazine and the study population can therefore be considered to be biased towards participants with specific interests or problems/needs. Participants recruited through doctors were not actively engaged in a patient organization but otherwise did not differ significantly in how they lead their lives from those who were – i.e. they did not differ in terms of their personal, demographic, and disease characteristics. As the main focus of the study was to explore subjective experience and meaning-making related to activity and participation in everyday life the study population engendered insights into active strategies and ways of managing difficulties. These insights point to various difficulties this patient group faces and the need to develop treatment and support to counteract such difficulties. A potential limitation to the study was that hand OA was self-reported for participants recruited through the magazine, since we were not able to attain documentation for their diagnosis. On inclusion they were all asked specifically about being diagnosed by a doctor and how. Only those who stated they had been given a diagnosis were included. Presenting the findings through three cases has the potential disadvantage of suppressing other important voices from the data set. The cases were selected according to their ability to display some general issues throughout the empirical material thus counteracting this potential disadvantage. The approach
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proved to be beneficial for providing comprehensive contextual information for such a complex concept as participation. Generating information about social practice to inform the concept of participation is a methodological challenge. To produce information on participation research, questions about participation had to be phrased in ways relevant to the social practices of the participants. The choice of an open-ended method for generating data provided flexibility and proved to be well suited to explore experiences of participation in multiple social contexts. Conducting photointerviews proved to be beneficial for exploring issues of relevance to managing everyday living. The approach reduced the authority of the researcher and helped to raise the participants’ voices.
Conclusion Empirical findings indicate that persons with hand OA experience participation restrictions in the conduct of everyday life. Self-invented strategies and environmental support are amongst the main features of how participants manage difficulties and challenges. The study participants experienced activity and participation as interrelated across social contexts. Participation is about actively taking part in social practices in situations of significance and meaningfulness, whereas activity limitations focus on technical and physiological problems that are task-specific and related to performance. These insights are important for considering the development of clinical practice in order to identify the scope of clients’ activity limitations at any stage of rehabilitation. Acknowledgements: The authors are grateful to all who participated in this study. The study was financially supported by grants from the University of Southern Denmark, the University College Zealand, the Research Foundation of the Danish Association of Occupational Therapists, the Research Initiative for Activity Studies, and The Danish Rheumatism Association. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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